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Sometimes a pothole doesn’t result in a flat tire, it just shakes you up a little.

It’s funny when you’re looking out for bumps in the road, how you can completely miss a big ol’ pothole that jacks your sh*t up.

Maybe I only think this is funny because I live in the south or because I can mimic it really well…. and because there are some nasty potholes down here! And not just the metaphoric kind.

This remission junk has me all flustered.  I’ve been in remission once, it lasted a year.

Being hyperthyroid sucks.  The first time that led to my diagnosis was great, though.  I had loads of energy, I lost a few pounds, and I felt like I was always on allergy meds (read: speed).  Aside from these signs, the first noticeable abnormality was when a guy I was seeing mentioned that my heartbeat was twice as fast as his.  I dismissed it until my throat swelled and I freaked out and went to the doctor, was referred to an Endocrinologist, and went on anti-thyroid medication.  I didn’t think too much about it once things settled down.  The gravity of the diagnosis did not sink in until two years later when I came out of remission.  I didn’t fully understand what was going on in my body or what it meant to live with an autoimmune disease that would take such a toll on my body, mind, and relationships.

Looking back, even though it just felt like twenty-something melodrama, I had a lot of emotional turmoil that fluctuated with my levels.  Graves’ is associated with anger spells.  I had those.  “Graves’ rage”… I even lost a couple of friendships because of it, though I didn’t understand or forgive myself and them until recently.  Graves’ Disease often gets misdiagnosed as bi-polar disorder because you really do have those high highs and low lows.  I remember a Thanksgiving with my family in Boulder about four years ago and I had this spell of incredible anger/sadness/depression to the point where I thought living wasn’t such a gift.  Thankfully I made it through that, and it’s a place I never want to visit again.  At that point, I was on the same dose of AT’s and wasn’t having my blood work done regularly and I think my thyroid levels dipped too low.  I learned an important lesson and have gotten my levels checked regularly, every 6-8 weeks, since then.

When I came out of remission and went hyper for the second time, it wasn’t pretty.  It aged me about 8 years, instantly.  People have said to me “oh, at least you have the good one where you lose weight.”  …  get ready for an anger spell.  In fact, I did lose weight, but it was all lean body mass, muscle mass, cardiovascular strength, I lost a lot of the fatty tissue under the eyes, making me look like a crack whore.  When I went back on medication, I gained a good amount of fat on top of the muscle loss, I had belly fat overnight – which was something I never had all of my life, so my body composition has changed.  The average weight gain after 4 years from Graves’ Disease regardless of treatment method, is 25 pounds.  So, even though I fear weight gain after a thyroid removal, I’ve manged to keep my weight fluctuating within a range of about 10 pounds, so I suppose I’m doing alright so far.

Other fun side effects of being hyperthyroid include heat intolerance, shortness of breath from simple things such as speaking, fine muscle tremors, heart arrhythmia, and anxiety.  Right when I came out of my pseudo-remission, I tried working in fine dining.  Serving martinis and pouring wine were quite embarrassing.  I had a very noticeable tremor in my hands and was completely uncontrollable.  Guests must’ve thought I was hungover or ‘drying out’.  I’m sure I was judged, but I have a feeling I was being judged just because I was serving them in the first place.   Also, when speaking, which I had to do a lot of, I would run out of breath.  I tried to hide it, but it was as if I’d run a mile before speaking to each table.  We also had to wear jeans, a long sleeved, white button up, and a full body burlap type apron.  As you can imagine, Atlanta is quite warm in May.  The building where I worked was old, air conditioning leaked right out the walls, and forget it if I had a patio section.  I was a sweat ball.  I’m usually the person who is always cold, so this was a new thing for me and I felt like I was suffocating in my clothing.  I didn’t stay at that job for very long.  Also, it was a shitty place to work.

Fortunately, at the age of 19 I experienced a panic attack, which has enabled me to talk myself down from the hundreds of attacks I felt coming on over the last six years.  I know this is directly related to thyroid, because I don’t experience anxiety when my levels are normal.  I’ve been fine for months and months.  When they’re up, though, I’ve felt on the verge of one at work, behind the bar, in the middle of service; on the highway; anywhere it would make a scene, I’ve had to talk myself down from one.  Clearly, that makes genuine, friendly interaction difficult sometimes.  I’m pretty proud of myself for dealing with it through breathing and mental tools, but looking back, MAN is that exhausting.  I think most people would be on Valium, or whatever the patented, brand name anti-anxiety pill of the year is.  (Notice what I’m reading off to the right there, it’s heightened my skepticism of prescription medication.)

Relatively shortly into my relationship with my boyfriend, he surprised me with Ray LaMontagne tickets, which, even though I guessed and ruined the surprise, I was really, really excited about because I’d missed the opportunity to see him live a couple of times and I really like him.  Anthony had worked that day and so we decided to swing by Whole Foods and eat something before heading out to Chastain.  All of the sudden, at the hot bar in Whole Foods, I started having palpitations, like regular, frequent palpitations; unlike the occasional disturbance after exercising or something.  It was very scary, I was literally thinking “I don’t want to die yet, I have so much left to do” while staring at the napkin dispenser and trying to calm down.  Then, by the time things settled and we left for the show, we ended up arriving right at the intermission and were disappointed to find that we’d missed Ray and had to settle for David Gray.  I had to use my mental strength to appreciate what I had (David Gray and an awesome boyfriend who wasn’t my boyfriend yet) and not what I didn’t have (the experience of seeing Ray LaMontagne live).  Either way, I don’t want to put my heart in danger like that ever again.

These are all symptoms that subside once thyroid levels are brought down.  The problem is that the cardiovascular effects become more dangerous as I get older and levels don’t adjust the instant you take the pill.  It’s a long process to get the levels down.  The key to thyroid medication, whether supplementing or blocking, is consistency.  It takes a minimum of 6 weeks to see the effect of a dose, so it can take about a year to get both T4 and T3 into range.  That’s a long time to be dealing with symptoms like these.  I think I’ve had enough of those wild swings.  It’s very disruptive and damaging and after 6 years, I’m looking for some stability.

As many fears as I have concerning this surgery, the one real hope it offers me is a chance at stability.  I recognize that it might be a rough go at first, trying to find the right levels, I may not feel right for quite some time.  I might not ever feel right.  I don’t even feel right, right now.  My levels are so low that I’ve been experiencing hypothyroid symptoms.  Depression, tiredness, lack of energy – I have to force myself to go out for a run and when I do, it’s like I’m running through three feet of water.  Only a few months ago, might I remind you, I came in 3rd in my age group for the Thanksgiving 5K and craved going out for a run.  It’s a stark difference in how I feel with a reduction in my thyroid levels.  My muscles just feel like they’re not getting what they need to work.  It’s a strange feeling, unlike losing fitness from being inactive.  It’s a very strange feeling.  I also have had a little bit of depression, which I don’t like at all, but when I can recognize these as physical symptoms from low thyroid, it helps me to not identify with it and therefore not beat myself up or think something is wrong with me, other than a stupid autoimmune disease.

My hope is, once I find an optimal dose of thyroid hormone after surgery, that I can take those wide swings out of the equation and get on with my life.  It’s taken a lot of mental energy for me to try to maintain any sort of homeostasis, and in fact, mostly I have to fake it to trick myself into feeling balanced.  There’s no denying that I am at the mercy of numbers, but I have a certain element of control if only in the perspective I choose to view my circumstance.  It’s tough in the moment when things are out of whack, and it’s a lot easier to look upon my experience with normal levels of thyroid hormone in my bloodstream.  I’ve made this decision with a level head and maintain my decision.

I don’t want to let this surgery creep up on me while I’m waiting and seeing.  I want to actively move towards it with intention.  Participate, not let it happen to me.  That’s very important in avoiding regret.  I have to approach this with the intention that it is my choice.  I’ll never be 100% sure that my decision is the right decision, and that’s what has kept me from making this decision.  I have to move forward with the attitude that I’m moving forward.  I do not have the option to look back after the surgery, and though I can still cancel it in the next 26 days, I have to take that perspective now.  There are several very good reasons why I have made this decision that don’t really change according to my latest lab values.  I am still scared.  Very scared.  So scared that I have been writing letters to the people I love, just in case….  But I’m moving through this fear and it could be the best thing I ever do.

Maybe it’s all just a big hoax to trick me into thinking I have control of my destiny, but I’ll leave that discussion up to the philosophers of yore and Stephen Hawking, and I’ll just focus on my perspective.

 
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Posted by on February 24, 2012 in Graves' Disease, Total Thyroidectomy

 

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You just might find… you get what you need.

So this is my third flare of hyperthyroid since diagnosed with Graves’.  On the previous two occasions, I took methimazole, my levels went down, my dose decreased and eventually I achieved remission or some pseudo-remission anyway.  I’ve never had my levels go back up upon decreasing the dosage after my levels dropped nicely.  Well, I just got my levels back last week and after decreasing to 5mg per day, my levels went back UP!  Jesus Christ.

My levels on 3/4/2010 were as follows:

Thyroxine or T4 – 9.4 mcg/dL (normal range 4.6-12.9)

Triiodothyronine or T3 – 116 ng/dL (normal range 59-174)

Thyroid Stimulating Hormone .05 mclU/mL (normal range .34-5.60)

This lab was when I felt I was coming out of remission, under a LOT of stress, ended a relationship that changed the direction I thought my life was going, and looking back at pictures, I realize I had started to have goiter around mid-February.  Possibly sooner, but I don’t remember and it wasn’t bad enough that I was self conscious, just noticed it from a certain angle in a photo from late February.

I was put on 10 mg per day of methimazole.

Between this time and August, I had a terrible time trying to get medicated properly.  I waited too long between appointments and started increasing my meds because I felt hyper-er and hyper-er, so my prescription ran out faster.  When I was desperate to get a refill, I had a nightmare encounter with a nurse who would not allow me to have a refill without an appointment which got delayed first because I forgot about the bank holiday for which the lab was closed so I had to reschedule in order to do my labwork before my appointment.  Then that appointment was rescheduled for an entire MONTH later because my doctor had a death in the family and had to return to her home country.  I hope it does not sound like I’m complaining about that.  I certainly understand.  The problem was with the nurse and the fill-in doctor and fighting to get my prescription refilled.  I was taking sometimes 10, sometimes 15, sometimes 20 mg of methimazole per day.  I realize now that this was irresponsible, but I was in panic mode and just wanted the symptoms to fucking stop.  I was hating this disease and feeling like a victim.

So, because of a liver enzyme test, which was high, I had two labs within a few days of each other.  My labs on 6/25/10:

Thyroxine or T4 – n/a mcg/dL (normal range 4.6-12.9)

Free T4 1.7ng/dL (normal range .5-1.6)

Triiodothyronine or T3 – 155 ng/dL (normal range 59-174)

Thyroid Stimulating Hormone  <.01 mclU/mL (normal range .34-5.60)

Then my labs on 6/28/10 were:

Thyroxine or T4 – 7.8 mcg/dL (normal range 4.6-12.9)

Triiodothyronine or T3 – 184 ng/dL (normal range 59-174)

Thyroid Stimulating Hormone .01 mclU/mL (normal range .34-5.60)

I’m not exactly sure how they changed this much in a matter of three days, but I was instructed to take 10mg in the morning and 5 at night for a week, then just 10 mg per day.  So I did 5mg twice per day and my levels came back as the following.

Labs for August 10, 2010:

Thyroxine or T4 – 6.1 mcg/dL (normal range 4.6-12.9)

Triiodothyronine or T3 – 127 ng/dL (normal range 59-174)

Thyroid Stimulating Hormone .03 mclU/mL (normal range .34-5.60)

So my levels had come down nicely and my dose was lowered to 5 mg per day.  I was thinking remission might be in store for me soon.  I have not had any relief from my stupid goiter and I’m goddamn tired of wearing my hair down.  I should say as an interparagraphical footnote that I swear when I’m extremely frustrated or very serious and passionate about what I’m saying.  I don’t do it on purpose, it just happens.  The rest of my speech is pretty PG-13.  So, I’m sorry, but I’m bound to use offensive language and if you suffer from Graves’ Disease, I probably don’t need to provide this disclaimer.  I wish I could remember the status of my goiter last time, but all I have are pictures from when I was pretty severe and only just starting on meds.

So after the standard 6 weeks of 5mg per day, I felt my symptoms coming back.  Arrhythmia, fine muscle tremors, anxiety, FUCKING GOITER (which just never left)…  I’d been having bi-weekly acupuncture up until my meds were reduced but things had been really slow at work and I had to postpone treatment and my levels went back up.  Go figure.  Perhaps that was part of the reason.

So my levels from 9/24/10 came back like this:

Thyroxine or T4 – 11.6 mcg/dL (normal range 4.6-12.9)

Triiodothyronine or T3 – 267 ng/dL (normal range 59-174)

Thyroid Stimulating Hormone .05 mclU/mL (normal range .34-5.60)

MOTHER FATHER!!!   I could feel this happening in my body unfortunately, so these results are not a surprise, though I was hoping for one.  So my meds which were cut in half at my last visit have now been tripled.  I’ve been instructed to take 5mg of Methimazole 3 times per day.  It’s surprisingly difficult to space them an even 8 hours apart with my erratic schedule.  The note on the lab work from my Endocrinologist read:  “Your level has gone up some.  More stress?”  Yeah, no shit.  I’m inundated by stress.

I hate my job and am getting too old for my line of work but can’t seem to get anyone to pay me a living wage to do anything else I deem the slightest bit satisfying.  I never even made it through a second interview for a job I felt completely qualified for, which paid $10 per hour.  Since I have a high health insurance premium, a car payment, and no roommates, this pay rate would’ve been unacceptable.

I’m meeting several members of my boyfriend’s family this week on a tropical vacation with this big ass growth in my neck and I don’t want to be consumed by fear and insecurity which would inevitably leave a bad impression on them.  I want to be myself, but I’ve got out of whack hormones and a physical deformity, I don’t know how to get over it so I can just be the person my boyfriend sees.

I’m about to turn another year older and I’m still doing the same unsatisfying job that I was doing at 21.  It’s a younger person’s work and I hate it.  I hate the environment, I hate the lifestyle, I hate the hours…    I feel like I’ll never find healing while I’m trapped in this work.  So I had a small almost epiphany the other night.

I’ve been working to change to more positive thinking, so each night I write down good things that happened each day as a way to dwell on the positive rather than the alternative.  I was reading back at some of the things I’d written and I came upon this exercise where I wrote all of the things I DO want rather than what I don’t want; what I don’t want has driven most of my life’s decisions, big and small up until now.

When I wrote this, I was still in a relationship with the person I broke up with last December and clearly knew was not the right person for me.  Here’s what I wrote:

When I think about my future, I imagine a satisfying, safe, healthy relationship with a man who I love and who is also in love with me.  He validates me, doesn’t judge me based on my humanity, but loves me because of it. …  Each day brings us joy that we get to share our lives with each other; thankful that we can go follow our own paths and then return to the warmth and safety the other provides.  I want to believe that it’s possible for me to create and have this in my life.”

I had completely forgotten about this until I re-read it.  The amazing part for me is that I have the relationship I was talking about maybe a year ago when I was in a different one.  It may seem silly, but after reading this and realizing that it has manifested, I wrote some more things down about my career situation and hope to look back a year from now and say   “Holy Shit!  It happened.  I never thought it would and it has.  I’m doing work that not only pays me a decent wage, but it’s satisfying and fits my lifestyle.”  I actually think it’s possible because I never thought I’d have this kind of relationship that I have now and it just sort of happened.

Around the same time that I wrote the above, I wrote some other things that I’d like to send out into cyberspace so that I may come back and look at them both to remind myself of my commitment to the choices I make to bring these feelings to my life as well as to look back on and say “Holy Shit!  This is my life now.”

“What I’d like for my life is to feel accomplished; to feel proud of what I’ve done and proud of what I’m doing.

What I’d like for my life is to fall in love with someone who is capable of sharing their love with me.

What I’d like for my life is to trust that I’ll be okay.

What I’d like for my life is to feel comfortable financially.

What I’d like for my life is to feel passion and joy for life and be conscious.

What I’d like for my life is to feel inspired and creative daily, hourly.

What I’d like for my life is to earn a comfortable living doing something I love.

What I’d like for my life is to feel safe being deeply, intimate and vulnerable with another person; to feel safe in a relationship.

What I want for my life is to feel positive and hopeful for the future while fully living each moment.

So dear reader, or just me…   Here’s what I’d like for my life today.  I want to achieve balance in my body without surgically removing any more parts from it.  I want radiant health that comes from both food for mouth and food for thought.  I want to be an inspiration to others with “incurable” diseases and help them find the path that’s right for them that may not have already been laid out by another.  I want to defy the odds and become whole and healthy.  I want to write a book.  Yes, that’s right.  I want to write a book and this is the only subject that I can go on endlessly about, so perhaps this will be the subject.  I want to keep my body intact and live free from medications.  I want to channel my stress more effectively so it doesn’t get clogged in my endocrine system.  I want to love life.

 
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Posted by on October 8, 2010 in Graves' Disease

 

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